The R-Word

Yes, yes, a thousand times yes. I agree completely with everything you just said.

Have found out that my meds were working TOO well, causing other problems, and I need to cut back.  ( Or is it just a "side effect"? )

Are they working too well BECAUSE I'm remission?  How would I know?

If I cut back, ..... how far?  That's the 64-thousand-dollar question ... what is there is no happy medium?  What if - I just can't take them anymore?  

I've already given up Celebrex - COMPLETELY.   Now I've got more aches and pains but - my stomach pain went away.  Now - Prilosec is giving me muscle/neck/nerve-whatever spasms. Do I risk esophageal cancer if I stop?  Well, I can't stop entirely ... but I'm down to 2 or 3 a week. 

I've also cut back on Enbrel - this is thet 7th day since.  Am I commiting emotional and physical suicide? Or should I just wait and see... if the RA comes "roaring back" as my rheumy as always said?

Will the couple of semi-healed places on my skin finally heal?  Or will I have more joint damage while I'm figuring this all out.  (Ha!  Figure WHAT out!)

Hey, Lene, I'm there ....

Goood luck to y'all out there!

I'm on Remicade. I have an infusion every four weeks.  I feel pretty "normal" a day after the infusion.  You think that would thrill me but I know it's only good for about 3 weeks and an extra five to six days.  Usually what happens is 72 to 48 hours before the next infusion the "r" word just cuts out.  If I've over done it over the past 3 weeks and I'm in that "RA what's that?" mode, I pay dearly.  Of course if I'm cautious it isn't much better.  Pain and swelling is pain and swelling.  In the Monopoly game of life I feel like I'm always pulling the "go to jail" card.  I don't want to get greedy, I don't need "the Boardwalk" card but "pass go and collect $200 dollars" would be great every once in awhile.

I am completely with you!!!!  The 'R' word is verboten.  The part about how you begin to tentatively expand your life when RA is being managed really hit home, and how it then means you have more to lose.  I think about that a lot now with all the recent changes in my life...but am hoping for the best and trying not to operate out of fear! It's the best we can do, right?  So good to know I am not alone in this crazy cycle, though.   

My wife is 32 years of age and had this problem since last 14 years. She has had high and low of this disease. In 2008 she was advised after acute RA/NO Remission, to have two infusions. After infusion she was in pretty good shape for about one after infusion after then she started having the problem. Now she is again depress that what the use of this infusion when I agian develop the same problem though severaty is not that much.

Please share any member their experience who had Rituxamb or Mebthra infusion.

Regards

SARAZA 

I was on Plaquenil for a year, and kept complaining to my rheumatolgist that I was miserable. I could not walk more than 3 blocks without serious pain in my hip, and I was crawling up stairs. So, she finally changed me to sulfasalazine. I can now walk up stairs with no pain, and one day I actually walked 3 miles! I have also lost 23 pounds on a vegetarian, low-sugar diet (mostly vegan). So, I can't say whether it's purely the meds, or the weight loss, or the diet change that made the most difference. I know a high-sugar diet can cause a lot of inflammation.

Sometimes now I forget that I have RA. I feel completely normal. Other times my shoulder aches or pops out of place, or I have an aching in my big toe, or my hands hurt like hell when I try to grate zucchini manually (I really need a food processor).

It's the little things that remind me that I'll always be sick- it will never go away. Of course, the huge improvement gives me hope for the future that nothing has to change, and I can accomplish all of my goals, and I push the spectre of being crippled to the back of my mind. Then, when that little flare kicks in, it reminds me that I can't forget- it's something I''l have to always live with, and I need to make alternate plans for the future, when I'm not so mobile.

This disease just simply sucks, but I try to remind myself when I see someone in a wheelchair, or someone who has MS, or cancer, or whatever, that it could be worse. For now, I'm just going to do the best I can with what I have. I'm even buying a tradmill. Now that I can walk most of the time without pain, I think it's the right time to try to lose more weight to lessen even more of the stress on my knees.

One day at a time, we can make the most of what we still can do. That's the internal strength that RA can never take away from us. 

I did not realize until I read your post, I have been doing this! I absolutely refuse to use the R word and even refuse to admit when I am having a "great" day.  I always say "Oh, I'm doing pretty good" or "Yes, the meds are working...so far".  It's like I'm afraid to jinx myself!

So glad that I'm not alone...!!!

I find myself constantly knocking on wood in case the demon is listening to me make plans. My friends and family play along and say loudly, as if the demon may be listening, "You are in no way going shopping with us this weekend, are you" or " There is a barbeque this weekend in which we are sure you want no part of, right".

It's like being superstitious, And I am in no way going fishing this weekend either!!!!

Does it matter if you are in remission? I have been sick for so long(since 2005) I'm not sure I would know what remission is. I've been trying to get SSI disability for severe degenerative disc disease, Fibromyalgia and RA and my appeal was turned down for the 3rd time. This judge feels that I should sit, stand and walk at least 6 hours a day and be able to lift 10lbs frequently and 20lbs occasionally. But every doctor I see tells me don't even try it because you're only going to feel worse. Remission...what is that? Can anyone enlighten me please?

I can only hope for such a thing. I don't say the R word either. It's been years of pain, and then my dx, and the meds still dont work. I keep changing them and they keep failing me. I too was denied by SSDI, the reason? We accept that you are unable to work now, but you MAY be able to in the next 12 months. I can only hope to be able to walk and function well in the next 3 months. I am very happy for anyone that can reach remission with this disease! I just wish others understood it better. Great post Lene, as usual!

     You took the words right out of my mouth!  The R work is one that I hate to even think about, for fear that I will have a flare.  I am constantly worried about the next flare.  They are so awful and painful.  The dread is always in the back of my mind.  So,...when I do get a break, I quietly "tip-toe" through life adding a bit more and a bit more when I feel brave. 

     Once in a great while, I through caution to the wind and just do what I want to do with friends and family, thinking nothing of the price I will pay later.  But,...then the flare comes and I suffer bad.  I guess its just my defiance of RA.  I can't let RA be the boss all the time!